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Families Deeply Impacted By Autism Aggression, Study Finds

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Though aggression is not typical of everyone with autism, new research suggests that it affects many with the developmental disorder and brings significant and often lifelong challenges.

In a study out of Canada, researchers followed 15 families of male children and young adults with varying levels of autism. Of the study participants, nine families said that aggression is an issue they face.

In-depth interviews were conducted with caregivers in the families that cited aggression. Researchers also conducted home visits with eight of the families, but the ninth declined indicating that they were “pretty embarrassed” about their “damaged house.”

Overall, researchers found that families dealing with aggressive behavior struggled with social isolation, concerns about the safety of people and property, lack of respite care and limited professional supports as well as the added expense of repairs and home modifications. What’s more, the families were concerned about being able to find alternate housing for their child with autism as they aged, according to the study published online this month in the journal Focus on Autism and Other Developmental Disabilities.

Though the study was small, researchers behind the report emphasized that little has been done to understand the daily experiences of families coping with autism and aggression. Their findings suggest that there’s far too little support for individuals with aggressive tendencies and those affected by them.

Parents described an “unbearable” level of exhaustion, with at least one mother comparing her situation to being in “jail for life.”

While generally speaking families were happy with the care their child received for core symptoms of autism, most said professionals offered only limited knowledge and assistance for dealing with aggression either through medication or behavior supports. One family was actually kicked out of a home-based program for individuals with autism because of the boy’s aggression, with officials concluding that the environment was not “safe or productive.”

The study authors from the University of Alberta and the University of Calgary said they hope that the findings will offer insight into the type of resources families need.

“It is important to note that there were many similarities in families’ experiences despite much diversity in child and family characteristics, such as child age and type of aggressive behavior,” the researchers wrote. “From the perspective of the participants, there appears to be an urgent need for multidisciplinary professional services that adequately addresses aggression in individuals with ASD across the life span.”

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Comments (67 Responses)

  1. JMJI says:

    Want to make a “spelling correction to my previous post, last line should read ,”Everyone should read the chapter on Autism from the book “Far from the Tree’ to get a picture how we feel, and how desperate some circumstances are that as some of you may know have driven SOME parents to Homicide!.
    As a parent I can not express my sadness, is so painful to know your child is also suffering with this “condition”, feel that we don’t know what to do, where to go, who will take care of them if we are not here. I understand why some parents feel there is not way out of the suffering and before having a stranger at a state run group home or agency or facility, physically, sexually mentally abuse my child choose to take their lives. God please open some doors…!!! at least me I don not ask for him to be completely heal, just take away the aggression, the destruction, the lack of not understanding and defiance that take my son to hit and destroy and hurt us.

  2. JMJI says:

    I do think the numbers are higher than what was found…

  3. Ray says:

    The study while admiral units attempt to illuminate family challenges with autism does not come close in the severity, danger and lack of help for parents such as myself. My 23 year olds sons is littered with large holes in it from him kicking and hitting. He gets aggressive with parents and siblings weekly. No doctors or medications have helped. He has been in Sheppard Pratt several times with no beneficial results.the work place he attends says they cannot continue to support him because of his behavior. There is no place for him to go and the best medical help is lackluster and generally apathetic. I am one of millions who has lost jobs, spent thousands, stressed marriages, isolated, unable to attend basic social events and am terrified that the next 20 years will be worse.

  4. Jane Doe says:

    i would like to know what others are doing to prevent the explosive attacks by autistic individuals – what medications or other has anyone been successful with. Has anyone tried Majawana?

  5. Mom says:

    Our highly intelligent adult son was very angry, destructive and verbally abusive as a child. As a result of not being socialized, due to his autism, he had a rough time and so did we. He was put on psychotropic drugs when he reached adulthood. We have found that a small amount of psychotropic drugs is helpful. He has outgrown his destructive tendencies but still struggles. We are grateful that something can help him chill.

  6. Nadia says:

    My 17 year old autistic brother was for the most part a good kid. He had tantrums when he was younger but they were rare. Once he hit the teenage years, it just went downhill from there. He would have meltdowns over things that nobody had any control of. He would hit us and break things. He would run out of the house and just go outside running and screaming. We had to get a special lock for the door so he would not be able to go outside by himself. He refused to go to school and we couldn’t do anything. Bribery and punishments like banning him from the computer or video games never worked. It wasn’t like we could really enforce it. He was bigger and stronger than all of us. He is verbal but still has meltdowns. His school recommended we put him on medication. And those medications are often not helpful. It depends on which one works. We had to go through a trial phase with two different medications before we found one that helped a bit. The first two medications we tried actually made him more aggressive and/or had horrible side effects. The third kinda helps with his moods and makes him more calm but still it’s not a miracle. We still deal with his meltdowns and tantrums from time to time. It is horrible. It wolfed be OK if you are super rich and live in a big house with no neighbors close by. But not everybody is rich and we live in a home with neighbors nearby. The amount of screaming and noise he makes with hitting us and breaking things in the house is huge. Sometimes he goes to the balcony and just screams for a while. It’s very hard. We have neighbors and people are judgmental. One time they even called the cops on us and we had to explain that he was autistic and having a meltdown. Life is really hard. We cater to his whims a lot just to keep him quiet. Sometimes you just want some peace especially peace of mind. Life is hard but living with disabled is even harder. It takes a lot of patience, money, resources and again patience to deal with it. A lot of strength. Not for the weak. It makes me sad because no one understands. The doctors either recommend practical things that any sane person has already tried or they want to prescribe more medication. So will he go through his whole life being on medications? That’s more damaging than helpful and the number of autism is rising every day. I pray we find a cure soon.

  7. PM says:

    Read “The Explosive Child” by Dr Ross Greene. It CHANGED MY LIFE. Also read Alfie Kohn’s work – especially “Unconditional Parenting”. Life changing. We need to understand what the stressors are for these kids that lead to them not coping and expressing frustration and anxiety in these ways.

  8. Bill H says:

    I can’t believe what I’m reading. Next time your child attacks call the police! Press charges. Put them in jail. They are a menace to society (both physically and financially) and it’s only a matter of time before they hurt innocent bystanders.

  9. Sandy Deschaine says:

    My husband and I are also very saddened and frustrated with the aggression our daughter exhibits. She is on medication and a regular sensory diet. When is this issue going to be addressed? We also don’t know where to turn. The research needs to look into as to why some individuals with autism have melt downs and aggression. My daughter is 35 and she has to live with this every day.

  10. Kelly says:

    I am the grandmother of an aggressive autistic 16 year old. He is severely autistic, low functioning and violent. His parents have financial resources and live in an area where there is support from the schools and social services. There just isn’t a lot that can be done – medicine hasn’t caught up to this disease. He is in a special school, he gets behavioral therapy and there is even a small amount of money available for a few hours of child care per week. They’ve tried everything: special diets, vitamins, therapies, etc. The parents have done every possible thing, and been taken advantage of by quacks who promise a solution. The boy is now on meds to control his mood swings but the parents want him to be healthy and happy, not a zombie. Just because they want this doesn’t mean it’s possible however. And he’s still violent on occasion.

    His parents don’t talk about the violence much because their hope is that they can get him functioning well enough to go into a group home. If he gets a record for violence, then the only places he can live are institutions that lock the kids up like a jail for safety. Or he can stay at home.

    There really is no hope here, and it would be better if the parents accept that this child is not going to be able to have the happy, functioning life they wish for him. From what I can understand, the parents simply can’t accept that this child will need to be in an institution, and this is what is causing the most pain. I’m afraid of him myself, and am unable to control him. He functions as a 3 year old and understands just enough to be manipulative to get what he wants. If he’s denied anything, the tantrums are bad – kicking, hitting, striking out as violently as possible. All the other members of the family have had broken bones that they attribute to sports injuries… but I know the truth.

  11. Cherri D says:

    My son is 26 w autism & moderate mental retardation. He is a 6 yo in a 26 yo body. He had been extremely aggressive until at 15 yo it got to the point he could not stay in the home. We placed him in an amazing facility for a year. They tried several programs and meds. FINALLY they put him on Clozaril. Its been a miracle med for us!!!! He is funny and social. It has allowed the real him to come out. He still has his moments but rarely does he even use aggressive speech. Clozaril is usually tried when all else fails. There is help out there.
    And NO, jail is NOT the place for him/her. Whoever believes otherwise does not know what autism is.

  12. Anon says:

    Hmmm. I don’t know what will work for other families as all children are unique. However my son has become far less aggressive since I withdrew him from public school. They did everything they could, but as long as he was in school he was aggressive. Initially at home he was aggressive, but due to the lack of help from anyone anywhere at that time and having a younger child, I gave him a firm squeeze on the arm every time he attempted. I am anti-spanking, but I had no idea what else to do besides be his victim and let my 3 year old get hurt and it was not spanking anyway, it was a way of showing him my human limits. The good news is he stopped and no matter how angry he gets he will not hit either of us. Now I have him on several medications and suddenly a bunch of therapists calling me to take him in. He is using pecs cards and his own mouth to communicate his desires. It all has to be encouraged on my end but the more I am able to grant things he asks for the less frustrated he is. Of course he still gets angry if I cannot give him what he wants, but he knows hitting me is not an option. Usually he will just cry for a long time but he ends up in my lap hugging me because he seems to see me as a source of self control for him which he lacks.

    I really truly believe that the child who seems impossible to homeschool is the one who needs it the most. I feel more attached to him now and that is important. Getting him in home therapy is going to be huge for us. If I myself can help him I have big faith in qualified therapists.

    I say all this not to anger anyone or tell ppl to do what I do, but to try to be positive. I know that is hard and I cannot imagine having a grown aggressive child.

  13. Ann Bly says:

    My son just had a meltdown as we speak. Screaming, yelling and throwing things. Yes we are exhausted. I have numerous holes in my walls and have been spat at, kicked, punched and had things thrown at me too. He is 19 6 feetf tall and 300 pounds. He is becoming more and more difficult to handle as he gets older and recently these meltdowns have just been coming out of the blue.

  14. Ann Bly says:

    Just want to reply to Bill H. These are our children!!! Live the life before you cast judgement.We can not just lock them up and throw away the key, apart from the fact there is nowhere really for them to go. If there were more support networks for us then maybe this aggressive behavior could be controlled. We need help not judgmental opinions!!

  15. Cheri says:

    Living with the dark side of autism is painful and exhausting. My adult daughter has become progressively violent more and more frequently. She has just been taken for a 72 hour emergency evaluation. After years of trying to get help is this all that there is? To all the parents out there I fully understand. Not enough available resources. Crises intervention has failed before. My entire family has tried to help and cope with this. Where do we turn to? Not safe anymore.

  16. earning wings says:

    I work one on one with a non verbal 13 year old boy who has autism and the mentality of 2 yr old. This is my 4 th year with him. Moving from elementary school to middle school has been very challenging to say the least. It hurts me to see his behaviors, now out of control in his growing body, get in the way of his potential. I am disappointed the district won’t provide 2 staff to help achieve some success with our small directives and ensure more safety during his combative outbursts. He is a roller coaster of sweet looks and smiles to hitting, scratching and biting. Every 15 mins the entire day. This year is the worst hes ever been. I have seen him be successful in the last 3 yrs so its very hard for me to let go as he digresses. If the teacher and other staff feel they can’t help him anymore then maybe he doesn’t belong in this program. He is stonger than me now and we can’t go hands on for safety. This has been an amazing journey with him. He has taught me how to look at the world in a different way.If you don’t have patience, empathy, humor, strength, the ability to improvise, and just take it one day at a time then you won’t last long in the life of a person caring for an aggressive, smart, quick, strong, silly, gentle, never predictable, but always worth it-autistic child. He has inspired me to go back to school for occupational therapy. I do care for individuals like my friend and I hope to help others like him and lead the way to more answers. God bless

  17. Alison Houston says:

    My 11 year old son with Autism has been very violent and aggressive for years. While I love him dearly, my life has been a living hell with no relief for years. My son was put into a special school for children with Autism 5 years ago, and he has done amazingly well there. In fact, it only took him a few weeks to learn the rules and follow them. At home, however, he rules everything, and we give in out of fear of being hurt and having everything destroyed in our home. I finally started calling the police for help at the end of May and all through the month of June. My son was refusing to go to school day in and day out, and he was beating on me much of the day. The police came to my house at least 15 times in a very short period of time, and there were 2 or 3 days where they responded 2 times in the same day. They did nothing to help me, and in fact, they refused to transfer him to a mental health facility where we had a bed secured and waiting for us. They said that we had to do it, and even the rescue squad refused each time to transport him, even though he was calm and not hurting anyone each time the police and rescue squad arrived. Long story short, someone from Medicaid called CPS on me, and my son was taken away for going on 5 months now. He spent at least 6 weeks in the state mental health hospital, then 3 months at a residential facility, and now he is living in a group home. All of this has been under court order. My husband and I have had no say or input in anything. I am so sad, mad, frustrated and sick over the whole mess that I am truly in despair. The Disability Law Center of Virginia spoke t me at length and made some good recommendations, but I really feel it is hopeless trying to fight an entire county. My son has returned home now for at least 6 2 to 3 day overnight visits home, and the last 4 times, he has not hurt anyone, hurt himself, or broken anything. I had secured a DD Waiver for my son in July 2013 which was granted on an emergency basis. We had been over number 1100 on a waiting list! I fought like the devil so I could get this waiver and receive services, but now the county has lost it for me. My son would have had this waiver for his whole life. Now, the county is keeping our son away from us and billing us a ton of money that we don’t have each month. Chesterfield County Virginia should be greatly ashamed at the way that they have treated my son and our entire family. I have to add here that he does not hurt other people, only his family members. He was fully compliant at all 3 of the lengthy out-of-home placements. My poor son was deemed to not meet the medical criteria to be held in the mental hospital by both Aetna and Magellan (Medicaid), yet he was held for many weeks after this was determined. He was nearly strangled to death on July 4th, and yes, I have proof (photos, written report). He also was left in filth covered underwear which was also scattered all around his room every time that we visited him. I am writing here because I really need to connect with some other parents that know how hard life can be and perhaps who have had to fight in the courts system for their own child when all they ever wanted was some in-home help, respite, training, etc. alisonseeks @ achoo dot com (oops I mean yahoo)

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